Sunday, May 11, 2014

Having ME is bad enough, without being miserable about it

I like May. All the shrubs in my garden are flowering, the countryside is lush and green, the birds are busy breeding, and summer's on the way.

Despite having had ME for 28 years, I wasn't aware that May is ME Awareness Month. I'm all for lobbying for research funds and stuff, but I avoid most ME sites and message boards because of the overwhelming negativity you find there. I dislike the terms "sufferer" and "victim". There are people with ME, not sufferers or victims. If they're associated with constant depressing "woe is me" messages, they're less likely to gain sympathy or support. Why? Because that's how it is. People with other diseases don't seem to feel the need to beg for sympathy in quite the same way, though the media does like a good sob story.

Campaign for more research funding, raise money for the same, be assertive about your rights as a chronically ill and disabled person, but please try to avoid whingeing, however shitty you might feel. Save that for your nearest and dearest, who might be used to it. As I don't have a carer and only the cat to listen, most of the time, it would be a waste of time to whinge anyway.

ME isn't my only problem. See why I love the NHS. I've found that the best way to deal with my multiple ailments and the pain is distraction; doing something, anything, to take my mind of them. Of course, when you have a disabling condition, that imposes limits. But if you're interested in what's going on in the wider world, your own problems may be largely ignored. I ignore mine, as much as possible.

Yes, I know that there are a minority of people with severe ME, who spend their lives in darkened rooms. I admit that I'm sceptical about how some of them came to be so ill, but that's got me into trouble before; nothing attracts vitriol like questioning how other people manage their illness.

I could die any day - we all could - and I don't want to waste any more time feeling sorry for myself than absolutely unavoidably. Fuck that!

Click here for previous posts on the subject.

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